Before I received the gift of a traumatic brain injury (TBI), I really didn’t know what one was. Sure, I was familiar with the term, but after my stroke, I was surprised to learn that I had one. The constant dizziness, lack of balance, fatigue, the weakness in my limbs, alternating bouts of insomnia and super drowsiness, and other things; what was that about?

Since it looked like my life had turned upside down and sideways, I figured I’d better learn what had really happened and what I was in for in the immediate future.

After that it took me a while to realize that the people around me were still where I had been before my TBI and didn’t really understand what a TBI is and what it does to survivors. I also came to understand that as well-meaning as they might be, they would never fully understand until they had my hands on experience.

Family, friends, caregivers: where could they get the knowledge and understanding to help a TBI survivor cope with their new reality, and learn to cope themselves?

I desperately wanted the people in my life to know and understand what was going on with me.

I’ve seen websites that offer advice, but most seem to come down to this: be patient. The sites I’d seen didn’t offer much in the way of explaining what others need to know that will actually help others be patient. Patience is good; I know we can be a real handful at times. It must be pretty hard sometimes not to feel angry or frustrated.

Instead of honoring a single superhero or a pair, we are going to honor a large group of the real-life superheroes who make a tremendous difference in the lives of brain injury survivors and the brain injury community.

Today, we are honoring, appreciating and sending our love to our caregivers.

Thank you, caregivers, for all of your hard work, strength, perseverance and support.

Please accept our award certificate as an acknowledgement of all that you do.

We love you! 💚🤗

Know a special real-life superhero in the brain injury community? We’d love to hear about them. Click here to learn more and nominate someone today!

In the last year and a half, I’ve discovered a couple of valuable relationships I’d been missing out on before my traumatic brain injury (TBI): a primary care doctor and a caregiver.

I never had those relationships because I did the most boneheaded thing I’ve ever done: I didn’t see a doctor for years. If I had gone, I probably wouldn’t have had a stroke and wouldn’t be doing this blog chronicling my new life with a TBI.

So here we are, with me writing about the value of of a good doctor and a good caregiver. I was lucky enough to stumble upon both a great primary care doctor and a great caregiver, so I can’t really offer much advice on how to find either; all I can really do is to tell you how I found my own doctor and caregiver.

Here’s how that happened.

After my stroke, I was forced to relocate from St. Paul, Minnesota to Tacoma, Washington; one of the first things I did was register with a social services agency. They required that I have a physical evaluation and referred me to a medical clinic that was on their approved list.

I went from there to the clinic, not knowing what to expect since I hadn’t seen a doctor in ages, and really not looking forward to finding out.

After a long wait I was seen by Dr. Louis Enkema, a genuinely kind man. We hit it off instantly. I was pleasantly surprised that he spent time talking to me as a person, and not as if I was an experimental lab rat. Over the years, I had heard from people whose doctors were cold and impersonal; this was not the case with Dr. Enkema.

At the appointment, Dr. Enkema gave me a pretty thorough physical exam: X-rays, heart and lungs, hearing–the full monty. And every step of the way he made sure I knew what was going on and asked me questions to make sure I did. We had a fantastic conversation where he asked me questions about myself and my life. He took the time to really get to know me, and he told me about his personal life in turn.

Dr. Enkema made a sincere effort to get to know and understand me.

I knew right away that he was going to be my regular doctor and I was going to see him every chance I got. In the months since, he has welcomed me to come in and talk any time, not just when I have something scheduled with him. He always makes me feel like he’s more than my primary care doctor; he’s also my friend, and he places a high value on my well being. He is always positive, always upbeat, and very supportive. He’s always willing to give me good answers to my questions and encourages me to ask them. I’ve written before that my doctor is fully supportive of my self-care efforts; Dr. Enkema was that doctor.

My only criticism is that he doesn’t have a jar of lollipops in the office.

The other stroke of good luck I had was that my dear old college friend Nancy lives in Tacoma. We had been in and out of touch over the years, and it took me a few days to realize we were now in the same city. I had her number in my phone, called her and found she didn’t live very far away from where I was.

It turned out Nancy had acquired lots of medical knowledge over the years and named herself, my medical adviser.

I call her my dear friend and my caregiver.

I met Dr. Enkema and reconnected with Nancy in the span of a few short days.

Nancy has driven me to my medical appointments as well as sat in during visits with Dr. Enkema. Nancy’s made valuable recommendations about my diet, tells me things about my prescriptions, and generally keeps me on the straight and narrow. Although we don’t live together, she’s always there when I need something I can’t do for myself.

While I can’t give advice on how to find a good doctor or caregiver as good as the ones I have, I can suggest some qualities to look for based on the strengths Dr. Enkema and Nancy share.

I think a good doctor and caregiver should:

These are qualities apart from medical knowledge and competence. Sure, you want them to know what they’re doing, but try if you can to get the full package.

I think you can get caregivers through state agencies that are trained and certified. Before you commit to one, I’d say try to meet with them first, explain what you are looking for and see how well you hit it off.

Try to interview your prospective caregiver.

From what I understand, it might be possible to go through the same preliminary process with a doctor as well.

Or you can do what I did, and just be incredibly lucky.

Isaac Peterson performing. (courtesy photo).

Isaac Peterson grew up on an Air Force base near Cheyenne, Wyoming. After graduating from the University of Wyoming, he embarked on a career as an award-winning investigative journalist and as a semi-professional musician in the Twin Cities, the place he called home on and off for 35 years. He also doesn’t mind it at all if someone offers to pick up his restaurant tab. Peterson also welcomes reader comments. Email him at isaac3rd@gmail.com.

May 28th was the five year anniversary of my cerebellar stroke, my brain injury. Time for some reflection. So, what have I learnt in the past five years?

I’ve learnt a massive amount about the brain and brain injuries. I knew absolutely nothing before, so this wasn’t too difficult to achieve! I’ve learnt that a pair of neurosurgeons (and their staff) saved my life following my post-brain attack complications. How these people do what they do mystifies me, along with all other medical professionals. I think they are just wonderful.

I’ve also learnt that it was much, much worse for my family than it was for me. They will say differently, but I stand by that statement. My wife watched me disappear into the operating theater around 9 pm on May 30, 2013 for my brain surgery, not knowing if I was going to come out the other
side. The operation to decompress my skull took over six hours. After the surgery, my wife was with me in ICU telling me I was in hospital, that I’d had a stroke, that there was nothing to worry about and that I’d had an operation. Every five minutes she told me the same thing as my short-term memory was non-existent. She asked the docs how long I’d be like this for and would I recover my memory. They said they didn’t know. I think of the roles being reversed and how I would feel if I had been told that about my wife’s memory.

When I was in ICU, one of the male nurses got chatting with my eldest son and discovered they shared a mutual interest in sport. “Let’s see how your Dad’s memory is for sport, shall we?” he said, and they both asked me a whole load of sports related questions. Who is the manager of the English soccer team? Who’s the captain of the English cricket team? Who’s the British and Irish Lions rugby team coach? Which team are the current Premier League champions? Who’s the captain of the English soccer team? And so on. And I got every single answer wrong. Every one. Well, given that the year was 2013. If it had been 2005, I’d have got every single one correct! How bizarre is that?

Somehow, I thought it was 2005 and not 2013. Now, I have absolutely no memory of this sports quiz at all (in fact, I have no memory of anything for about five days). But, somehow, my brain was furiously trying to answer the questions; it was just 8 years behind. How my family coped with all that, I just don’t know.

Apparently, I also played a joke on my youngest son. He came to visit me in ICU, and I thought it would be hilarious (!) if I pretended to talk really incoherently, like I had a cleft palate or something.

Quite why I thought this, I have no idea. What I didn’t know was that he’d spoken to my wife and his brother, so he knew I was OK.

“Yeah, very funny, Dad,” was his droll response.

(As a weird twist of fate, two years later I had a maxillectomy – the removal of my upper left side jaw and teeth – so that, without my prosthetic denture, I do sound like I have a cleft palate).

Now, in my defense, I must state that we are a family with an off-the-wall sense of humor. Somehow, the brain attack, the brain surgery and the meds had distorted my normal level of banter into something very unfunny and a bit macabre. I really have absolutely no memory of any of this, your honor.When I heard all these stories, over the coming months, I felt very guilty.

My wife was with me every step of the way, sleeping (or trying to) on chairs at the hospital. I had visits from my sons, stepson, step-daughter and her husband, all of whom worked long or unsociable hours and had trips
of an hour or so to get to me. I don’t really remember any of these visits but I am very grateful to them, nonetheless.

What else? Oh, I have learnt that most people are in denial about what has happened to them. Me included. It took about two years and many sessions with a neuropsychologist to help me get out of denial and face up to my situation. I guess the enormity of where we brain injury survivors suddenly find ourselves is just too immense to be processed in one go. A bit like the death of a loved one.

You just can’t take it in. This grieving for one’s old-self takes a long time and, I think, is overlooked by medical professionals who focus on the physical mechanics (Two legs? – check. Two arms? –check. Two eyes? – check. Right, you’re fine, off you go. Next patient, please).

I have also learnt that a good attitude will get you a long way. I am thankful that I have inherited my Mum’s stubbornness (or, as I like to say, determination) and my Dad’s single-mindedness (or, as I like to say, focus).

As an aside, my parents got married in 1940 during the Blitz in London, both
aged 20. My Dad was a radio operator in the RAF and got posted to Kenya, my Mum drove ambulances as a volunteer. Before the war, my Dad was a professional sportsman (cricket) and lost six years of his career to the war, when he would have been in his prime, physically. My Mum hated
thunderstorms as they reminded her of bombing during the war. I think they were both very resilient and determined, like most of their generation. Both these traits are essential for the brain injury survivor.

No one is going to do this for us. We have to do it ourselves. And it’s tough. Very tough. We have to fight, every hour of every day.

Lastly, I have learnt that just when you think you have taken everything life can throw at you (marriage, children, divorce, redundancy, financial difficulties, death of parents, death of family members, etc.) and you’ve settled in to a comfortable, middle-aged groove, then, all of a sudden –
POW!! – life throws yet another curved ball, bowls yet another googly, tosses up yet another surprise.

My final piece of learning – live each day to the full, as best as you are able!

Take care everyone, and thanks for reading my blog from Scotland.
Andy

About Andy: On May 28 2013, Andy was struck down by an ischemic cerebellar stroke. He developed complications and two days later underwent emergency brain surgery to decompress his skull due to hydrocephalus. He almost died and has five missing days of which he has no memory of whatsoever. Prior to his brain attack, Andy was a professional musician, a drummer, and earned his living both as a player and teacher. He has been unable to return to work but is writing a CD of music inspired by his stroke story in order to raise awareness of stroke, particularly among younger people. As fellow brain injury survivors will understand, work is progressing at a snail’s pace! This project will also raise funds for the charity, Different Strokes. Please visit www.brainattackmusic.com to read more and to listen to some demo tracks. Andy lives with his wife in the beautiful Scottish Borders, very close to where the River Teviot meets the world famous River Tweed and has two sons, a stepson and stepdaughter, all of whom have flown the nest and are making their own way in life. As well as a deep love of all types of music, Andy enjoys watching sport, reading about history, learning about the brain and enjoying the peace and calm of the Scottish countryside.

DePuye-Phillps serves as a BEST board director and BEST guest blogger. She is also a dedicated caregiver, instructor, counselor and mentor.

Here’s what Maggie’s nominator had to say about her:

Maggie often uses the symbol of a lighthouse when talking about caregiving and BEST: a beacon of hope where the light of support is always on.

Maggie herself is that very lighthouse she describes, offering care, support and hope to fellow caregivers and the brain injury community through her hard work, generous nature, unwavering support, strong leadership, advocacy for others and boundless positive energy.

Maggie is a caregiver for a veteran with traumatic brain injury and post-traumatic stress syndrome (PTSD). Through her personal experiences, extensive research and teaching background, Maggie has been a ray of light and valuable resource for caregivers and families in both the civilian and military communities.

Through Maggie’s service as a longtime board director for BEST, she brings amazing leadership, wisdom, determination and positivity to the organization.

Maggie also serves in the deaf and hard of hearing community as a counselor, instructor and mentor.

Maggie’s superhero-powered light shine bright for our community–we are deeply grateful for all she does for others.